"It takes courage to write about motherhood in a culture that sets women with children on the sidelines, and it takes even greater courage to give voice to the powerful emotions and fears that swirl deep beneath the surface of our daily lives..."
-Kathleen Hirsch and Katrina Kenison, Mothers

Wednesday, August 17, 2011

when there is hope, hope

(A heartbreaking, but take-action post.)

A month ago, D and I found out that our good friend, John “Sly” Sylvester might have ALS (Lou Gerhig’s Disease).

Earlier this summer, John and his wife, Tessie, spent two weeks at the Mayo Clinic in Rochester because over the last year John had lost mobility in his hand and arm. At Mayo, John underwent a slew of tests, and the doctors came to the conclusion that John most likely has ALS. There is no definitive test for ALS—the diagnosis is made through a process of elimination.

There is a slim chance, however, that this diagnosis is incorrect. Instead it might be an auto-immune disease that mimics ALS. But the only way to identify and halt the progression of this auto-immune disease is for John to undergo a series of infusions of Intra Venous Immunoglobulin Antibodies (IVIG) over the next 3 months. If the therapy is successful, it will mean a full recovery for John. If the injections prove futile, the ALS diagnosis will be confirmed. But if John doesn’t receive the treatment, the auto-immune disease will remain undetected and lead to the same conclusion as ALS.

The average patient with ALS is given 2-5 years to live.

John is only 38 years old. Tessie is 30. Their son, Gus, the cutest little guy with the most beautiful eyelashes I’ve ever seen, just turned one. They deserve a chance to be a family.

John has dedicated his adult life to helping others. He and D played soccer together for the Minnesota Thunder in the late nineties, and since then he has worked in the Minneapolis Public Schools, Harvest African-centered Prep School in North Minneapolis, and as the girl’s coaching director for the Minneapolis United Soccer Club.

John met his wife Tessie in 2001 when they were both coaching summer youth soccer. They were brought together by their love of soccer, their dedicated connection to their families, their strong faith and their belief in giving back to the community.

John and Tessie both come from humble backgrounds. John wouldn’t have been able to make it to the level of a professional soccer player if it hadn’t been for the many coaches that waived fees in order to make it possible for him to play the game he loved. This is why John wanted to work for Minneapolis United and be able to help other young people, regardless of socioeconomic status, realize their dreams.

As a young woman, Tessie worked hard to obtain an academic scholarship to St. Thomas University and later completed dental school so that she could provide a much-needed service in low-income communities. She is currently a part-time dentist in a free dental clinic in St. Paul that serves homeless and marginalized people.

They are both self-insured, and their insurance *will not* cover the IVIG treatment, John’s only chance at surviving. The treatment costs $75,000.

Please donate what you can to the John Sylvester Medical fund. (Donations are tax-deductible.) If you are in the Twin Cities, join us at Brit’s Pub in Minneapolis on Sunday September 11 4 – 8 p.m. for the Rally for Sly silent auction and benefit concert featuring Tim Mahoney, Kari Noble, Dave Hudson, and Hip Replacement.

John and Tessie have spent their lives helping others. Now they need our help. Donate. Please. And give John a chance to see his son grow up.

8 comments:

I hope for John and his little family that people get behind this post and donate. I imagine that some big fundraisers are in the pipeline and I wish them the best of luck with them too. No child should ever have to say goodbye to their parent at such a young age.

I am so sorry to hear of this and will certainly say prayers for your friends. I wish I could donate more but will do what I can. I'd also recommend one amazing blog, written by a writer friend of mine and HER friend, both of whom have (and had, unfortunately)parents with ALS. It's a stunning piece of work -- the blog -- here's the address: http://alifestill.com/

I also recommend the work of Tony Judt who died of ALS this year. He was a long-time writer for The New York Review of Books and wrote a stunning series of articles about his condition.

Hi Kate. Sorry to read this post. A friend of ours (male) lived with ALS for nearly 5 years; he was 23 when diagnosed. He was a sports information director and a thoughtful writer who maintained a blog when he could not longer work. A year after he passed away, a group of us published a book of some of his blog entries -- it's a great memory.

I'll be thinking of you over the next months and years as you support John and his family.

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I'm a mama and writer and teacher. I've been helping mothers tell the stories they need to tell since 2006. My first book, Use Your Words: A Writing Guide for Mothers, is just out from Viva Editions. I've also written a memoir, Small Continents, which is about the premature birth of my daughter due to severe preeclampsia and is currently being shopped around. I teach "Motherhood & Words" online and at the Loft Literary Center in Minneapolis. I'm interested in writing and teaching and motherhood and where these things intersect. On this blog I review motherhood literature, interview authors, check in about my own writing and teaching, and sometimes post about my daughters. Join the discussion!

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